#MEAction & 6 ME Orgs Call For CDC To Change How It Tracks ME/CFS

Pyrrhus

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#MEAction & 6 ME Orgs Call For CDC To Change How It Tracks ME/CFS
https://www.meaction.net/2021/08/23/meaction-6-me-orgs-call-for-cdc-to-change-how-it-tracks-me-cfs/

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).

Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign the code for chronic fatigue syndrome which has the same code as the symptom of chronic fatigue. As a result, it is impossible to accurately track the mortality and morbidity of ME/CFS or its relationship to Long COVID. This affects not only the more than 1.5 million Americans with ME/CFS, but also the tsunami of Long COVID patients who could develop ME/CFS.

This proposal will be discussed at the upcoming meeting of the NCHS ICD-10-CM Maintenance Committee on September 14-15, 2021. Details on registration for this proposal will be shared when NCHS announces it. After the meeting, there will be an opportunity for public comment prior to a final decision by NCHS. If the proposal is accepted, the change would be implemented in October 2022.

Our partners in this proposal include the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, and Pandora Org.

Solve ME will be holding a webinar and listening session on September 2 at 1 PM EST to discuss the proposal and hear any concerns and answer questions.
 

Pyrrhus

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https://us02web.zoom.us/meeting/reg...Fl2mCNvvcUbLW?mc_cid=eb09a38ae2&mc_eid=UNIQID
Listening Session on Proposal for ME/CFS in the ICD-10-CM

Description
Seven organizations have submitted a proposal to the National Center for Health Statistics (NCHS) to add ME/CFS to the neurological chapter of the ICD-10-CM where myalgic encephalomyelitis and postviral fatigue syndrome are located.

The organizations submitting this proposal include: #MEAction, Open Medicine Foundation, Solve M.E., International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Massachusetts ME/CFS & FM Association, PandoraOrg, and the Minnesota ME/CFS Alliance.

This listening session is open to all and will be attended by organization representatives to facilitate open dialogue and build consensus for this new proposal.

Note: This session will focus only on the proposal submitted to the National Center for Health Statistics to revise the coding of ME/CFS in the ICD-10-CM. The ICD-10-CM is the system used to code diseases in medical records and is used to track mortality and morbidity. The session will describe how ME/CFS is currently coded, the impact of that situation, and the change requested by the seven organizations in their proposal. It will not discuss medical education, strategies to address the stigma, treatment options, research priorities, or what the research tells us about the pathology of the disease.

For more information about the proposal, visit our FAQ page: https://rb.gy/jm1n1k
Time
Sep 2, 2021 10:00 AM in Pacific Time (US and Canada)
 

Pyrrhus

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Proposal accepted.

Solve ME said:
This coding problem is finally being fixed in the 2023 release of the ICD-10-CM, being implemented October 1, 2022. Going forward, Americans diagnosed with ME/CFS, including any new cases following COVID, will no longer be invisible.

The ICD-10-CM is the US version of the International Classification of Diseases used to track diseases globally. When the US implemented the ICD-10-CM in 2015, the term “chronic fatigue syndrome,” the term almost always used by US doctors for ME/CFS, was assigned the same ICD code as the symptom of “chronic fatigue, unspecified.” At the same time, the term “myalgic encephalomyelitis/chronic fatigue syndrome,” the name adopted by US federal agencies and in clinical guidance, was never added to the ICD-10-CM.
Source: https://solvecfs.org/tracking-of-me-cfs-cases-in-the-revised-us-icd-10-cm/
 

wabi-sabi

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Yippee!

This is such a triumph for advocacy! Now that we exist in the ICD, we exist in the mind of medical providers, insurers, and (hopefully) the legal system for disability claims! We can be counted for research, so this will advance our field there too!

I am one of those people that had been coded as chronic fatigue, NOS since I got sick. Now I (and all of us, don't mean to leave you out!) can ME/CFS in my chart for real!

I am so grateful for these advocacy groups and their work for us.